King family feels beat of fundraising

Feeling beat

Susie Kockerscheidt

Katherine Edwards runs Schomberg Music Studio and has been doing a lot of fundraising for cystic fibrosis after learning her daughter, Rebecca (front), had the disease, although it doesn’t stop the toddler from playing with her younger sister, Harper.

By all appearances, Rebecca Ruppert may be the next musical prodigy in King.

The three-year old bangs away on the bongos, strums the ukulele and jams on her toy accordion with the bountiful energy childhood affords her. You would never know from the scene at the Schomberg Music Studio that Rebecca has cystic fibrosis.

One in every 3,600 Canadians are born with the genetic disease and it is the most common fatal genetic disease affecting Canadian children, according to Cystic Fibrosis Canada.

Rebecca’s mom, Katherine Edwards, was floored when she got the call from the doctor, after the new-born screening, saying her daughter had the disease.

“Most people know the words, but don’t know what it means,” she said. “I had no idea what it meant.”

Ms Edwards was told to avoid the stories on the Internet and take the information in stride.

“It was scary,” she said.

While cystic fibrosis predominantly causes a build-up of thick mucus in the lungs, leading to severe respiratory problems, it affects each patient differently. In Rebecca’s case, her pancreas stopped functioning when she was nine months old, but since then, her life has been relatively normal, other than routine checkups at The Hospital for Sick Children and taking enzymes whenever she eats to help her digest food.

She’s very lucky so far not to have anything too major, Ms Edwards said.

While the situation sounds nightmarish to many parents, Rebecca’s dad, Stephen Ruppert, said it’s important to not live your life scared.

“We are very luck to have great care in Canada,” he said, adding she gets checked at Sick Kids every three months. “I’m sure if that wasn’t happening, I would be a little more nervous.”

Cystic Fibrosis Canada has been a huge help to the family, answering its many questions and continuing to raise awareness.

The couple decided to host a fundraiser for Cystic Fibrosis Canada three years ago, which was such a smashing success, it has become an annual event with the third fundraiser last month at Schomberg Community Hall. Mr. Ruppert, who runs Schomberg Music, is also part of the band Wheat Kings and provided entertainment.

“The first year we had no clue what we were doing,” Ms Edwards said. “But everybody in the town wants to help out. Everybody is just so helpful.”

Final numbers aren’t in yet, but Ms Edwards said they have raised a little less than $11,000 for CFC during the three fundraisers.

It’s small way the couple can give back to bring change to the disease that mysteriously inhabits their daughter.

Just thinking about how much work went into the drugs his daughter has to take to digest foods is enough to make Mr. Ruppert do everything he can to raise money to fight the disease. Ms Edwards highlighted the importance that all babies go for newborn screening. If Rebecca’s pancreas episode had occurred and they didn’t know she had cystic fibrosis, it would have been much harder to diagnose.

Rebecca now has a baby sister, Harper, named after Harper Lee.

“It’s a nice small community. The people are awesome here,” Ms Edwards said.